We are the 1 in 8 women who hear, at some point in our lives, that we have breast cancer. Like you, we have crossed that invisible threshold into a place where no ordinary person can follow. This is what we want anyone following in our footsteps to hear:
'You've got breast cancer,' were the only words you heard in the consulting room. The rest was a blur. You're in a state of shock and in these first weeks, you'll just wish for someone to sit next to you and give you a space - to listen, to be scared and hopeful all at once.
You'll hear empty platitudes from people who care about you and they'll offer the same clumsy phrases: 'you'll be ok', 'you're strong', 'look at so-and-so, they're fine now'.
It's a truth universally acknowledged that the state of 'not knowing' (is it aggressive? has it spread?) closely followed by the anguish of 'waiting' (for results) causes us the greatest turmoil. Once you have a treatment plan, you'll galvanize yourself and although you'll be fearful, knowing the facts about chemotherapy and radiotherapy will help you feel more prepared and in control. These treatments are tough but inside each of us is the courage and strength to endure them.
You can't compare breast cancers. There are several types which grow in different parts of the breast and at different rates. Some women have mastectomies, others lumpectomies. Not everyone will have chemotherapy, but those of us who did wish we had known what we could do to alleviate the side-effects, while remembering that everyone is different and some suffer different, or more, side-effects than others. (Likewise, don't compare yourself unfavourably with that acquaintance who worked or so-and-so who ran a half marathon during chemotherapy).
You will need to rest after surgery but you will recover. Radiotherapy, which not everyone needs, sometimes leads to fatigue lasting for many months. Some, but not all women, have hormonal treatments. We didn't know about the many physical changes we would experience or that there could be long-term side-effects like lymphodema and some, but not all of us, find it hard to adjust.
Plenty of people will tell you that you're 'strong' and 'brave,' that 'you have to get on and kick cancer's butt'. But underneath all this fighting talk, you might be just plain scared. We want you to know that we didn't feel brave. We felt there was never any choice but to go on.
We will never tell you that you are lucky. Your cancer may have been caught early, and it might be treatable, but having cancer never feels lucky. There is no such thing as a 'good' cancer.
This is a time when your friends and family will rally around and you'll discover that love is a verb - you need friends who turn up with a casserole, take your children to the park so you can rest, or give you lifts to the hospital and sit with you in the waiting room. Some of your friends may desert you altogether - perhaps they have a family member who has had cancer, or they're scared of the word 'cancer.' You'll also find kindness in the most unexpected of places, often from strangers. Initially, you'll be overwhelmed by offers of support, but in a year's time, you'll need to remember to ask for help. This is 'sympathy fatigue'. We'll remember then to ring your doorbell, when you're at your lowest ebb, even if you've said you want to be alone. We won't try to fix everything. We'll hug you and say 'that's really shit.'
You will often be pleased that you look much better than you feel because you won't want to be defined by this illness, but it can mean that people around you will assume that you are well, over-estimating your capabilities when the reality is that you feel exhausted and poorly.
We won't give you advice on how to cope with cancer because we've learned there is no 'right' or 'wrong' way to deal with it. We wish someone had said 'be kind to yourself;' 'be your own best friend' because we struggled to slow down and needed reminding that it's ok to rest, to put ourselves first occasionally.
We know that you don't want advice about what to eat and drink or how to live your life more healthily (with the implication that you, somehow, brought this on yourself). You feel awful enough already and you don't need to be asking 'what did I do to cause my cancer?' when you're lying awake at 4 am.
Now, you can hardly bear to imagine 'the future,' which seems so clouded with uncertainty, but the day will come when you finish 'active' treatment. Although this is a time for celebration, it's also a time when you might feel lost and low. If you can, have a period of convalescence to recover.
We want you to finish your treatment with hope and optimism. Most of us are lucky enough to pass the first year with a clear scan. Then, you'll begin hoping that you reach the five and ten year milestones. You won't yet know about secondary breast cancer, but at some point you'll discover the courage to look in the darkest corners of your mind and face the fear that haunts you.
Let's be clear - this diagnosis is going to change you fundamentally. We are not exaggerating when we say that you might be traumatised by your experiences. But, your losses will be tempered by a profound gratitude for the astonishing miracle that is your life. You'll discover joy in places and people you previously took for granted. You'll find your strength and resilience. This is post-traumatic growth.
With thanks to Anita Traynor for her vital collaboration and the women at the Centre for Building Psychological Resilience in Breast Cancer.Suggest a correction